What is Trigeminal Neuralgia?

I keep talking about this ailment I have, so whiskey tango foxtrot is it?

Trigeminal neuralgia, or TN for short because it’s a tongue twister even for the medical crowd, is a chronic pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain.

TN causes the nerve’s function to be disrupted, usually resulting from contact between a normal vein or artery and the trigeminal nerve, causing the nerve to freak out and malfunction. Chemical imbalance can also cause TN.

The “NOIVE” of some nerves.

When you have TN, the slightest stimulation of your face, such as breathing, wind, cold, moving your hair back behind your ear, the kiss from your child, etc, can trigger an attack of of excruciating pain.

The pain can manifest in a number of different ways. For me, it does exactly that. I have an atypical presentation of the disorder, because I am special. (I no longer like being special, by the way, I would like to be dull normal please.)

I have a constant, ever present awareness in the left side of my face. Sometimes it feels like there is icy hot on it, sometimes it feels as though it is made of ultra fine glass. It’s not painful, per se, but it’s not pleasant.

I also have the attacks that come with the tiniest degree of stimulation. When I was first diagnosed with the disorder, I had the attacks rarely, but now I have them dozens of times a day.

The attacks last from 30 seconds to ten to fifteen minutes. They have a dozen different sensations as my brain tries to make up it’s mind about what the nerves are telling it.

Brain: Dudes, seriously, are you actually being punched in the jaw, sliced along the cheek with a knife, set on fire, and doused in ice water, all at once? What is going on down there?

Nerves: … FEEL ALL THE THINGS!!!…

Sometimes I feel as though I have the worst earache ever, sometimes it’s a toothache. I have actually checked to see if I have a sore tooth by poking madly at my molars with tweezers. I stopped doing that after I realized it would likely eventually cause an actual toothache. (To my credit, I never poked madly at my inner ear with tweezers.)

Sometimes I feel like a lance has been driven from the top of my head down through my left shoulder.

I am not doing well.

However, I am lucky. TN comes with depression, cause, OW. It also comes with isolation. I have my parents, Dan, my children, and a number of loving friends who have reached out, visited, sent loving texts randomly, called, emailed, and let me know I am not alone. I have support. I have people to hold me when I seize up and to remind me to breathe through it. I am going to be OK.

What’s next?

TN is first treated with medications, such as anti-convulsants and muscle relaxants. When that doesn’t work, they move onto brain surgery.

(From the Mayo Clinic Website)

Surgical options for trigeminal neuralgia include:

Microvascular decompression. This procedure involves relocating or removing blood vessels that are in contact with the trigeminal root.During microvascular decompression, your doctor makes an incision behind the ear on the side of your pain. Then, through a small hole in your skull, your surgeon moves any arteries that are in contact with the trigeminal nerve away from the nerve, and places a pad between the nerve and the arteries. If a vein is compressing the nerve, your surgeon may remove it. Doctors also may cut part of the trigeminal nerve (neurectomy) during this procedure, if arteries aren’t pressing on the nerve.Microvascular decompression can successfully eliminate or reduce pain most of the time, but pain can recur in some people. Microvascular decompression has some risks, including small chances of decreased hearing, facial weakness, facial numbness, double vision, a stroke or other complications. Most people who have this procedure have no facial numbness afterward.

Gamma Knife radiosurgery. In this procedure, a surgeon directs a focused dose of radiation to the root of your trigeminal nerve. This procedure uses radiation to damage the trigeminal nerve and reduce or eliminate pain. Relief occurs gradually and may take several weeks. Gamma Knife radiosurgery is successful in eliminating pain for the majority of people. If pain recurs, the procedure can be repeated. Because Gamma Knife radiosurgery is effective and safe compared with other surgical options, it is becoming widely used and may be offered instead of other surgical procedures.

There is a third procedure where they “Burn the nerve” causing complete facial numbness on that side. I was advised against that procedure because young people go quite crazy when they have a completely numb face. Apparently older people do not.

I am starting with the Gamma Knife radio surgery. My hope is two-fold. One, I will no longer have the TN pain. Two, I will become She-Hulk. (She was a lawyer, I totally fit the comic book.)

I can try the Gamma Knife twice before the other surgery. I can do that surgery once. I was told this will come back after every procedure. It’s just a matter of time.

I was also told they have no idea what causes it. Some people think it’s age, some people think trauma, some think virus. All they know is that it is more common in women than men, and it sucks. (That’s the official medical term.)

So there you go, that is one of the two ailments I have. The other, chronic persistent migraine, I will save for another post.